An Autism Carol

As I stood in my kitchen unloading groceries, I took a moment and stared out the window at the sun on the snow-covered mountains. The same cyclical thoughts circled through my head: “I need to make a plan for dinner. Don’t forget the chiropractor appointment. What’s the date? Did I remember to pay the electric bill? LIGHT BULBS! Must get light bulbs – lights are out in the bathroom. The bathroom….ugh….I’ve got to clean it today. Oh, I hope C makes it through the day at school without diarrhea. Must stay close to the phone…I’m tired.” I snapped out of it and continued to unpack groceries. I opened the door to the fridge to put the eggs away. When I closed the door, I jumped and gasped in fright….”I hope those eggs are organic,” said the woman now standing next to me. I took a step back, then jumped up and down, giddy with excitement. “KIM SPENCER! What are you doing here? Holy Shit! Where’s the camera? Is someone filming this?” I asked.

“HA! I wish!” Kim said. “You know I don’t miss an opportunity to spread the truth on camera. But No. It’s just me. Except it’s not. I’m a spirit guide. I look like Kim because you trust her. She has helped you navigate your life for years. She has helped you heal your son. I’m here because you need help. So for these purposes. I am Kim.”

Because it has been almost 20 years since I’ve seen Kim in the flesh, I didn’t care whether it was the real Kim or not. It was Kim and I was happy.

“Sit down,” she said. “We have talked almost every day for five years. You listened to me about the diet. You listened to me about therapy, about homeopathy, about vaccines. I need you to hear me now. I’ve gotta be honest with you. You’re blowing it. We’ve got some work to do. Where’s the TV? Gimme that remote. Whether you think you’re ready or not, you need to watch this.”

We sat down in my filthy recliners and watched as the TV flickered like a movie that was rewinding. Then, I saw images of my son through the years –each image only on screen for a few seconds at a time. I watched images of his life like one of those cartoon flip books we made as children: Not talking, no eye contact, running aimlessly, not sleeping, crying, diarrhea filled diapers. I saw toys that came and went as his obsessions changed: Thomas the Train, Lightning McQueen and Doc, Batman and Superman, the Cookie Monster video, Ben 10. I saw myself rocking him as a baby for upwards of five hours a day until my legs hurt so badly that I cried. I saw the rocking turn to swinging him for hours on end in his toddler swing. I saw the pecs charts, the signing books, the therapists offices. I watched myself as I drove him in the car for hours every day as he napped and I cried.

Feeling unable to breathe and beginning to get angry, I asked “Why? Why are you making me relive this? You are supposed to be my friend. Why are you trying to hurt me? Don’t you know that these are memories I suppress for a REASON. I don’t WANT these memories!”

“I know,” Kim said. “But you need them. Whether you realize it or not, these memories are necessary for you. And…you should know by now that no matter how hard you try, you can’t make this go away. It happened. It was real. I know it hurts, but you need to see this to be able to appreciate where you are now and how far you have come. You berate yourself constantly; You live in a place of fear and worry. You are MISSING your life.” She got up and looked out my front window. Then she turned back to me and said, “Give me a hug. You know I love you, but you have got to STOP IT! Quit beating yourself up. You didn’t make C sick, but you did help him heal. YOU did it. You.” She looked out the window again.

“What are you looking for?” I asked. “You’re making me nervous.”

“Alison’s late,” she replied.

“Alison? Alison MacNeil?” I asked.

“Of course, Alison MacNeil. Do you know another Alison? She should have been here 10 minutes ago with the invisible plane.” (For those of you who don’t know, in our little TMR world, Alison is our Wonder Woman and frequently rescues us in the invisible plane.) “And I hope she stocked it with some wine, ’cause DAMN, girl…You’re a horrible hostess!” And with that, I suddenly saw Alison waving at us from the vacant lot across the street.

We walked over, she handed Kim a bottle of champagne and said, “This won’t take long. I’ll pick you up in about an hour.”

“Well…Come on. Let’s Go!” said Alison.

“Alright, alright – but where are the stairs? This plane IS invisible.”

“You’re already inside. But sit down and buckle up. We’re gonna take a little ride.And stay out of the wine. You need to be sober for this.”

Suddenly, we were hovering over the playground at my son’s school. I watched as he walked aimlessly, staring at the ground….alone.

Not again, I thought. “My GOD! What is with you guys? Why are you trying to hurt me?” I pleaded.

“It’s OK, sweetie.” Alison replied. “Just watch.” Then I saw my younger son and his friends run over to C. They stood there and talked for a minute, then they all ran over to the tire swings. The little ones climbed on and C pushed them. They all laughed and squealed as he spun them around and around. Tears filled my eyes.

“See. It’s not as bad as you think,” said Spirit Alison. But the negative, worrying soul I have become responded, “Well, yeah. But that’s his brother. He’s not playing with the kids in HIS class.”

“No. He’s not. But he IS playing – and he’s not alone. And you have raised siblings who love each other. Doesn’t that MEAN something to you? Have you not even noticed?” she replied. In seconds, we were hovering over floats lining up for the town’s Christmas parade. I watched my son sitting on the float next to all the other cub scouts. They were talking about what they wanted for Christmas. C stood up and got close to the edge. I held my breath, waiting for him to fall, and watched as a classmate grabbed his coat and pulled him back. “Careful, C. You could fall.”

“Look at him. He is here with his peers – at night – without Mom. He’s doing it,” said Spirit Alison.

Suddenly, we were back at home. It was the same night. I could see my husband, my two kids and myself walking in the house, wet from the rain. I heard myself snapping, “Do NOT walk through the house in wet boots. Take your wet clothes off at the door and go straight to the bathroom. I’ll run you a bath. Then you need to put on your jammies and get ready for bed.” I watched my children try to get out of their snow clothes. I watched myself get frustrated by their ineptness and start to rip off wet coats and mittens. I could feel how tired I was. I could also feel their sense of helplessness and discouragement as their Mom seemed so disappointed in them. I watched as I walked to the tub and heard myself moan as I leaned over to fill it. “And NO fighting or splashing in the tub. I MEAN IT!” I watched myself walk to the kitchen, pour myself a glass of wine and retreat to the garage.

Spirit Alison looked at me and said, “Look at you. Look at your life. What are you doing, Sweetie? Can’t you see what you have? Don’t you know how many of us would KILL to be where you are and have what you have? You are an Autism Mom. You will always be an Autism Mom. I get that. But your son is almost recovered. Isn’t that what you wanted? You have a mostly-normal life. Why won’t you participate in it? Think about the memories Kim just showed you. Think about how far you’ve come. I get it – You know I get it – that’s why we chose the form of Alison to come to you – but you have got to start living in the present….in the moment. You are MISSING your life. Your kids are missing their Mom. You are so busy just trying to ‘get it done’ that you are missing the joy that can be found in ‘doing it.’ Get out of your head. Stop sweeping that same patch of floor over and over again as a distraction. I understand that you have years of painful memories, but the memories you make today can be filled with happiness. You have spread yourself WAY too thin…your job, your marriage, the kids, the house, the bills, the REVOLUTION… you’re overwhelmed right now – and you are disappearing because you can’t handle it. You have to find a way to simplify your life. I am here to be your voice of reason… just like I am in your real life. And just like in your real life, I am here because I love you and I want to help. Please… take care of yourself. OH SHIT! Look at the time. We have to go get Kim. She’s surely halfway through that bottle by now and will be drunk Facebooking shortly. I really hope you will start to see your situation differently.”

In seconds, the plane landed in the lot. Kim emerged from the house…”Damn, Ya’ll took long enough.” Handing me an only slightly empty bottle, she said “I’ve been busy. Here… have a glass of wine with your husband. Give me a hug, Girl. We love you. You got this. You can DO IT. Take care of those babies…and yourself. Let’s go, Alison.” I watched as my friends disappeared and felt such love and sadness at the same time. I wished they could be closer. I knew it wasn’t real….but I needed them. I knew I always would.

I walked back in my house which had been totally rearranged. Ghost Kim must have gotten bored. I sat on the couch, put my face in my hands and began to sob uncontrollably. I felt a warm arm around my shoulder and heard my Granny’s voice: “It’s OK baby. Go ahead and cry. This is hard.” I looked up and saw her face – a face I have missed seeing for so long. “Granny? Is it really you – or is it just a spirit who looks like you?” I asked.

“It’s really me. I’m here. I’m always here.” she replied.

“I miss you so much,” I cried.

“I know. You tell me every day. I hear you. And I’m always here to help you. I know the pain in your heart. I know how scared you are. I know that you are struggling and I know why. Your son is almost healed. You worked really hard, but you know that the work you have done for C isn’t the only reason he’s better. If all it took was hard work, all of your friends’ kids would be better too. You can’t let go of that. You can’t let yourself be happy because you have guilt. And you want so much for all of their sick children to be healed, and you can’t heal them. Can you?”

“No,” I said. “I can’t. And I want to. I want them to be healthy. My heart hurts so much for them. I can’t let go of it,” I answered.

“But you have to. You just admitted you can’t fix this.When you lie in bed at night trying to come up with solutions for your friends’ kids: what supplement might help Michael’s seizures, what churches or organizations might be available to help Cat, which bolts could be put on doors to keep Ronan safe, which doctor might be able to help Noah, if you saved that modeling video that might help Peanut…do you really think that at the end of the day you are helping? YOU can’t fix this. If you disappeared tomorrow, your Mommy friends would continue on. They are the smartest, most competent people you have ever known. They love you. And they love your support and friendship. But they don’t NEED you. They can and will heal their kids. You have to continue to fight for what’s right. You have to continue to speak YOUR truth and to help in the ways that you can….but you have to let go of the pain and the anger and the things you CAN’T control. You spend so much time in a place of darkness and sadness over things you can’t fix. You have to find YOUR place in this – understand your role – understand the ways you can help and recognize the parts of this that are holding you hostage. Right now, you aren’t doing anyone any good. Come with me. I want to show you something.”

Granny didn’t have a plane. We opened the door and I helped her down the stairs. We walked slowly down the street to a little ladies’ clothing shop near my house. We stood outside the big picture window and I saw myself with C. He was a teenager. I looked old and I was still wearing the same clothes I wear now. “Are we buying me new clothes? Good grief, it’s about time. OH! LOOK at my baby! He’s so big and handsome!” I exclaimed.

“No. You aren’t here for you. You are helping your son pick out a gift for his girlfriend.” she said.

I began to cry. “A GIRLFRIEND! he has a girlfriend?” I asked.

“Yes,” she said. And friends. He still struggles at school a little bit, but he’s OK. You heeded all of our advice. You started living in the present. You found the joy in your life and your family. Now….close your eyes.”

I wiped the tears away and closed my eyes. “Now…Open them,” she said. We were still standing in front of the store, only this time, my son was talking to the sales lady. “Where am I?” I asked. “What happened to me?”

“You are at home….sweeping, mopping, folding laundry, living in your head. You see…your son is still in this store; he is still picking out a gift for his girlfriend…only you aren’t part of this picture. All the time you spent worrying if he would be OK, you forgot to build a relationship with him. He is OK, but he would be a lot better if he had you. You missed it. And now it’s too late. What he needed most was you – and while you did a really good job of making sure his needs were met – you weren’t there. He missed out on having a Mom who felt joy, who was present in his life, who connected and participated. I know this isn’t the future you want. All you wanted in life was to be a Wife and Mother. You were given that gift, and you are throwing it away. Life goes by quickly, Baby. Please don’t let it pass you by. This is your chance and your choice to change. It’s time. Your boys need you – and you need them.”

“Granny, Can you stay? I want you to meet my babies.”

“I know your boys, just like I know you. I’m with them too,” she answered.

“I know…but they don’t know you,” I said.

“They don’t need to know me,” she replied. “But if you don’t make some serious changes, they won’t know YOU…and that would be a tragedy.” She hugged me hard. And then she was gone. I stood staring in the window of the little shop and then turned and slowly walked up the hill to my house.

I walked in the house, looked at the clock, and realized it was time to pick up the boys from school. I tried to let all of the visions and advice I’d received sink in. I felt a great weight lift – as if I’d just been given permission to let it go, to stop carrying the burden of sadness, to feel joy again. I felt loved.

My heart swelled as I saw my kids walk out with their backpacks. We gave hugs and I squeezed a little bit tighter for a little too long. I watched as my youngest took a giant leap into a puddle, but instead of shaking my head and showing him disappointment, I said, “Wow. That made a big splash.” I watched his beautiful little smile spread across his face…and I felt myself smile back.

I know that the changes I need to make will not happen overnight. I know that this will be a mindful process, but I also know that I can do it. It’s time.

P.S. To say that I’m no Charles Dickens would be the understatement of the century. However, I didn’t write this with any outcome or intention, so it is what it is. For me, this was a much-needed therapeutic exercise in self-reflection. We are so bogged down in the tediousness of life, sometimes it’s hard to see the forest for the trees. My Christmas wish for you is to see yourself and your life through the eyes of someone else – and not just anyone else, but through the eyes of someone who loves you unconditionally. Someone who loves you despite your faults and flaws and feels only love. You deserve Forgiveness, You deserve Light, You deserve Joy….and so does your family. The joy is there: We just need to get out of the way and let it find its way back in.

19 Responses to An Autism Carol

This is awesome! I will forever keep the part about living in the moment on my mind and not being stressed and angry. I actually “grunted and groaned” just the other night while bathing Kaitlin, shame on me! Thanks for writing this!

I picked the all time worst time to fast from fb. THIS NEEDS TO BE EVERYWHERE! This is so awesome. I bawled and laughed and cannot wait for us all to be together at AUTISM ONE. Most luckiest girl in the world to know you amazing thinkers. Love you Mountain Mama!

There is wisdom in this post. While we have to keep working, fighting, helping, standing…we cannot bear burdens not meant for us. Singlemindedness on what is ours to do is a gift to us and those around us. Thanks for the reminder!